LymeNet Flash: starting rocephin

LymeNet on Facebook

LymeNet on Twitter

Follow @LymeDiseaseNet

The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive

The Lyme Disease Network is a non-profit organization funded by individual donations.

»	LymeNet Flash » Questions and Discussion » Medical Questions » starting rocephin - any advise???

UBBFriend: Email this page to someone!

Author

Topic: starting rocephin - any advise???

kare
LymeNet Contributor
Member # 5041

posted

starting IV rocephin after 1 year of orals and injections. I have lots of coordination and balance issues - so I am another one that looks like she is always drunk!!

Posts: 128 | From Brick, NJ, USA | Registered: Dec 2003 | IP: Logged |

klcst
LymeNet Contributor
Member # 3427

posted

I wish I could tell you a positive experience with Rocephin, but I can't. It burns everything it comes in contact with including taste buds. It gives you a horrible taste in your mouth. It makes your heart work harder, which was an issue for me since I already had heart problems from the Lyme. I had an episode where I was in excruciating pain from the base of my skull all the way down my spine. It was horrible!
It will give you terrible fatigue.It screwed up my stomach and what I could eat it quickly was turned into diarrhea. They had to keep checking me for C-Diff.
I finally went off of it and I quickly went down hill with the Lyme. I got rid of my first doctor because he wanted to hit me hard with all these powerful antibiotics and no one seem to do well on this approach.
The people who I saw progress in where those visiting a doctor who prescribes moderate doses of antibiotics for the long haul. I know several of his patients that are symptom free after 3-4 years of this approach. Most are on Doxy 100mg BID, and 500mg of Biaxin (not time released) BID.
I too had problems with balance, vision, heart, neuro, etc... My balance problems cleared up in about 8 months on the abx.
I wish you a better experience than I had.

Lisa

Posts: 134 | Registered: Dec 2002 | IP: Logged |

Meemer
Member
Member # 6620

posted

Dear Kare,

I got so much better on IV Rocephin. It seems overwhelming at first, but becomes easier after a couple of days.

Have someone with you the first few times. Keep the sight clean. Have the steps written out in front of you every time you do the IV treatment so you don't skip a step. (Especially important if you are a forgetful Lymie)!

I went from bed ridden from fatigue and agonizing pain to a happy, functioning mom of four again after a month on IV Rocephin.

Now I'm on Doxycycline; 400 mg a day and I'm fine tuning. Small complaints now like pain behind my eyes and moderate facial pain. Other than that I'm up at five am and I go until the teenage kids are tucked in.

You'll do well. Don't worry. You can do it. I for one am root-a-toot-tootin' for ya! We're all here to see each other through. Good luck, and face it with a little humor. That helps me get through it!

Meem

Posts: 66 | From North Potomac, Maryland | Registered: Dec 2004 | IP: Logged |

beachcomber
Frequent Contributor (1K+ posts)
Member # 5320

posted

Don't be afraid. IV Rocephin is not for everyone. It was a turning point for me. It got me back on my feet and functioning at some level. It is the one Rx that made the biggest difference.

You should also check into Babesiosis and Candida protocols if you are feeling "drunk". Candida can really make you feel like you are headed for a DUI. Babs can affect your balance.

Good luck.

Posts: 1452 | Registered: Feb 2004 | IP: Logged |

marblenose
LymeNet Contributor
Member # 6477

posted

kare,
I am starting my 7th week of Roc.IV and feel like I turned a corner on Sat. The begining was rough for me where I had people watching over me. I felt like I was dying and on some level I was,all the die off of the bugs!!!
I live alone so I had incredible friends there for me. I am now starting to feel like my self again. My doc also just started me on oral zithro last week.
I've been dealing with this for 10 years now. Keep up with acidopholus with bifidus, also papaya enzymes restore the stomach lining.
Good luck.
Blessings,
Marblenose

Posts: 287 | Registered: Nov 2004 | IP: Logged |

mountainmoma
LymeNet Contributor
Member # 6503

posted

I had the best week in years after 2 weeks on IV rocephin. I was actually me again, at least for 4 days or so. Then, I slid into the worst month of my life nuerologically. I did keep taking it. now I know what bad herxing can be. A month of it, with basically 3 kids, christmas and no support.

This means the rocephin was doing its job, I guess. And I am here and alive. I think if you can handle it, it is a powerful medicine that has helped many. It probably killed alot of mine before I had to stop.

Hope for the best, but prepare for a few weeks of the worst. Get your house in order. Prewarn any support family you may have that you may temporarily need help or emotional support. That its short term so you can get better.

Good Luck

Posts: 222 | From Santa Cruz Mountains, CA USA | Registered: Nov 2004 | IP: Logged |

Printer-friendly view of this topic

The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA
http://www.lymenet.org/